I had an opportunity to hang out with Revival Worship Movement at the Chesapeake Jubilee this past weekend. If you know me or have read this blog, you know I can go on and on telling our story. I have a lot of words to say! There are SO many layers to it and it’s actually 22 years in the making. It all started with a prophesy 22 years ago when God said “I will turn the heart of one around. Your prayers regarding his life will come to pass.” We’ve seen physical healing, family healing and heart healing. As I stood there during that worship song, I realized God didn’t want me to beef up our testimony with lots of words this time. This time I was just to share briefly enough to say “Look what the Lord has done!” I don’t think I’ve EVER summed up our testimony in less than 2 minutes, even with a random person at the grocery store. It was a simple message of hope. Thanks to Terrance Howell and Revival Worship Movement for giving us a chance to share what God has done.
Tag Archives: Glioblastoma Caregiver
I’ve realized lately that being an inspiration really drives me. Not in a way that I want attention or that I feel like I’m receiving some kind of praise, but more in the sense of wanting others to be better, to feel better, and to have hope. If I can share my experiences and if that sharing can result in others having more hope or for them to find the energy to push through something they didn’t think they could face, or for them to have a desire to pay something forward and help someone else – that makes me want to share more. I want to see lives improved, refreshed, and uplifted.
I haven’t been sharing a lot lately for several reasons. Our life doesn’t change much day to day and there aren’t medical updates. In the beginning I was learning how to navigate Glioblastoma and I had three purposes for this blog – To give God the glory for the healing that I believed was going to happen, to keep friends and family updated, and to help others navigate their diagnosis and give them hope and inspiration.
Our experience with Glioblastoma is not a normal experience because Mike is still here 4.5 years later. Now I’m learning to navigate an entirely unplanned situation. I like to plan and I like to have an idea of what my future holds. Even when the prognosis was scary, there was comfort in planning. I had to plan for him to pass away as thats the normal outcome of someone diagnosed with Glioblastoma. I have learned that I have no idea what life has in store for my family.
….Then I realized that life would be hard either way. That losing him would be unbearable…and I also realized that this new normal wasn’t going to be easy or full of enjoyment either. I’ve had to embrace that its ok to feel that way. That I shouldn’t feel guilty for grieving what we had or what we thought our future held. I did lose a lot with his diagnosis. He is here but there are many things that we grieve that are no longer here. I had to realize that I couldn’t prepare for the future. I have to just face it each day and navigate the best I can. I’m a wife in my 30’s – but I feel like I’m living a lifestyle of someone much older. He’s like a dementia/alzheimers patient. Going from having a husband who was a strong head of household in many ways to now being the head of the household has really been a transition for me. All responsibilities fall on me. I now have a husband who doesn’t understand how to pour himself a glass of milk.
I’ve grown so much through this experience and I want others to know that whatever it is that you are facing – you can do it.
Having a husband on hospice and a 15 year old daughter who was pregnant felt impossible. We did it and we are still doing it. I could have given up. I could have decided I couldn’t face the next day. But I didn’t. I fought through to see the joy that I knew was coming. I’ve always held onto the thought that joy comes…if you hold on long enough, you will have a moment that made all the hardship worth fighting through.
Establishing a successful business felt impossible with the limitations of being homebound and taking care of such a hectic family – but I’ve made Trainer with LuLaRoe and have been absolutely blown away with the success of my business. For many months I thought “Ok, I will keep putting one foot in front of the other until I fail, and then I will throw in the towel.” I gave myself permission to fail before I even started. In my mind, I wanted to go ahead and try and get the failure over with so I could get that desire to try behind me. I knew I wanted to try selling LuLaRoe. I figured I’d fail. Guess what…I’m 6 months in and instead of bracing for failure, I’m now excited to continue to build my business. Sometimes you have to face a situation with tenacity. You have to dig deep and you have to fight to get through some things.
So here I am – hoping that I can give you some inspiration to face those things that feel impossible. New diagnosis, scary prognosis, personal situations – whatever it is, you’ve got this!
At about 1am after an exhausting day, I finally got into bed to sleep knowing I had to be up by 6am. Mike talks a lot as I’m trying to fall asleep and he kept saying “I’m proud of you. I love you.” And guess what, I woke up proud of myself. We have been together for 18 years and a lot of negative words were spoken in those 18 years. A lot of people who know us now would be surprised at the struggles we had. I’m pretty transparent about our lives in hopes to help others. Words are SO powerful. They have the ability to speak life into someone or totally tear them down and destroy them. Words have healing power. Do we want to build up our loved ones or destroy them? Use your words wisely and speak life into those you love. Words are creative. Negative words can creative a slew of destruction including insecurity and doubt. Negative words cause pain. Pain causes destruction. Negative words can destroy marriages and relationships. Positive words can CREATE. How COOL is that when you really think about it? By what we speak, we can create hope, love, encouragement, excitement, motivation, relationships! I could go on and on. I think all too often we like to blame someone for their actions against us but we take no responsibility for our words or attitudes towards them. Our words don’t even have to be specifically against them to destroy a relationship with them. Negative words are not going to return to us in positive actions for the most part. It takes a whole lot of grace to respond to negativity with something positive. I’m not saying I’m positive all the time. Yesterday was an emotional day for me and I ended up in tears several times. The thing is, I don’t unpack and live there. Facing the tough parts of life and then focusing on the positive is not only my goal. it’s my survival strategy.
We have a responsibility to speak life into those we love. This is so important for those with brain cancer and their caregivers too. If you are suffering and you have a caregiver, you can breathe so much LIFE into them by thanking them. Build them up with words, tell them they are doing a good job and that you appreciate them. I bet they will be motivated to take even better care of you. If you are the caregiver, you can build up your loved one by using words to show them they are NOT a burden to you. Let them know it is an honor to care for them.
Sometimes with brain cancer, depending on what area of the brain is damaged or where the tumor is located, no matter what you do, there is anger and aggression. (It’s not limited to where the tumor is located. Sometimes the brain has swelling and that swelling causes pressure to another area of the brain. Different areas control different functions, but swelling can cause your loved one to have functionality issues in different areas.) It’s hard to let those words and actions bounce off us as caregivers. It’s hard to not let that cause damage to us and our relationships. I personally pray for grace in those moments. I’ve prayed for protection over my kids that in those moments that there is a hedge of protection around them. I’m trying so hard to lead my example for my kids. If they see me act in patience and kindness, they are more likely to do the same. I learned this the hard way. When I react to some of Mike’s behaviors with frustration, the kids do too. I don’t always succeed, but I do better than if I didn’t try at all. I’m human and my first instinct isn’t always to act in love and kindness. This is an interesting graphic about what areas of the brain can affect different functions. It is interesting to see because Mike’s tumor was discovered in his left occipital lobe and he can’t read because the letters don’t make sense anymore.
I am sorry that it has taken me so long to update. Things have been crazy, as you can imagine. I’m so proud to announce that our Grandbaby was born on December 25, 2015! She is 3 weeks old and we all love her so much. The labor and deliver went smoothly and our daughter was amazing throughout the whole process. I was able to be in the room for the entire labor and delivery because my sister, brother and law and mom all stayed at our house to take care of Mike and the other two kids. Another cool fun fact is that they came home from the hospital ON MIKE’S BIRTHDAY! What a birthday gift!
As you look at these photos, I hope that you see God’s grace. I’m so proud of our daughter for choosing life. Becoming pregnant at 15 was overwhelming, but God’s grace has really been present through this entire situation. We are closer than we have ever been as a family and we have more joy than we have ever had. I am devoted to guiding Kayla in motherhood and making sure this sweet baby is loved and provided for. We’ve got this.
Mike was able to meet his grandbaby in the hospital and I will share the video that captured him meeting her. The very last few second is the best.
Another exciting fact is that this month we celebrate that Mike has been on hospice for TWELVE MONTHS! Praise God! He is 43 months PAST GBM DIAGNOSIS!
Caralyn Elizabeth Emmons born December 25, 2015. 7lbs 2oz, 19 inches long.
I look around and see the Kindergarten homework, sparkly shoes, silly artwork, video games and funky teenage combat boots. Today is a half day for the kids leading into a 4 day weekend. Before cancer entered our lives we always left town on long weekends. Long weekends were always our time to reconnect, re-energize and have some adventure. Instead of packing up for a weekend at the Outer Banks or some other destination, today Mike was officially admitted into home hospice.
What makes this especially difficult is that it isn’t something I can talk out with my husband. My person. The one who always helped me sort out big decisions like this. For awhile Mike hasn’t been able to comprehend his illness. He hasn’t understood why his head hurts or why he can’t “think right” as he says it. He doesn’t remember the brain surgery, radiation or chemo most days. The last several appts we went to for treatment, he didn’t understand why he was there getting an IV or what medication he was getting and why, even when we told him over and over again. The last appt he told me he was tired and didn’t want to do this. It has taken every bit of him to just walk into the office lately and he reluctantly accepted a wheelchair to get down the hallway after we got into the office. It has been months since he left the house for something other than doctor appts. The ugly reality is that I don’t even remember the last appt when he was able to walk into the bathroom on his own and provide the urine sample in the cup without my assistance. Not a glamorous piece of information, I know…but that’s the reality of it.
At this point he doesn’t remember conversations. He will ask me every two minutes where the kids are, even in the middle of the night if he wakes up. Most people would just know that their kids are in their beds under the same roof, but in his mind that logic just isn’t there. Talking to Mike about his treatment options have only left him in a state of confusion and distress each time. Any conversations about brain surgery or his diagnosis just leave him devastated as if he is hearing the diagnosis for the first time. I’m hesitant to post this because I do not want anyone talking gloomy to him or mentioning the word hospice. This may end up being a very private leg of this journey for our family. He is fine with the nurses that come into the home, and he is relieved to know that he doesn’t have to leave the house for doctor appointments anymore, but I do not want him brought down by sad conversations or devastated at the word hospice being said to him. That is not a moment of sadness that he needs to feel over and over again, and HOPE and POSITIVITY is important. We will let him live each day to the fullest with the most comfort possible, physically and emotionally. I will hold onto hope of a miracle, even as we are faced with hardships and an obvious decline. I will strive to rest in confidence that each day is already paved out before us.
**Just so we are clear since I am sharing this, Do NOT have a conversation with him about hospice.
At this point his body and brain are functioning so poorly that comfort care is the best goal for him. Since there is nothing further we can do, it’s in God’s hands. In God’s hands isn’t a bad place to be. God is bigger than cancer, bigger than treatment, bigger than the damage we have seen.
We have been so blessed each year around this time (each October our year resets and the medical bills swarm in until about January when we meet our cap) by an online fundraiser and The Semper Fi Fund helping with medical bills. One of my closest friends set one up again and I wanted to share the link here. Even if you don’t donate, check out the gallery of photos of my amazing family. I love the photos on there, I feel like they sum up our family perfectly!
Today Mike is doing well. I’ve found the most perfect channel for him, its called “Velocity” and its all cars, all the time! Anytime there is a 70’s model Chevrolet Chevelle on there he gets really excited because that is what he had in high school! They seem to come on the Mecum Auto Auction show quite often. Its really fun to see him get excited. There are quite a few shows that restore cars too. He really enjoys those shows.
Right now he’s watching a Christmas movie. Happy Saturday everyone!